Heart warrior Evie is just one of the thousands of babies, children and adults living with congenital heart disease in our region who are supported by CHSF.
Evie’s mummy Chelsea has kindly told us all about their family’s story so far and why they’ll be wearing red this February…
Evie, my miracle, my was born with a rare heart condition – Tetralogy of Fallot with VSD. They found Evie’s condition on my 20-week scan at Pontefract and I got an emergency referral to the Leeds Congenital Heart Unit at Leeds General Infirmary.
I was so scared waiting for my scan and when the day arrived I was so nervous. I was just 21 when I found out I was pregnant and they gave Evie a 50% chance of survival.
I was offered the option of a termination, not once but twice. But I wanted to give my girl a fighting chance and boy did she prove them wrong. She’s such a fighter!
I was told Evie would be a poorly baby and would need quite a lot of surgery. They even said she might only live a few hours! She was such a small, cute, little baby. Evie weighed 5Ibs 11oz and she was beautiful.
As well as her CHD, Evie also has other needs such as profound deafness, muscle delay and Urban Syndrome in her eye.
On the 7th October 2019 Evie did have two Glenn shunts fitted as her oxygen levels were quite low at 75%. However, the surgeons wanted Evie to gain more weight before she was able to receive her full heart repair.
“With COVID still around, I did everything on my own. Nine long hours my girl was in theatre but I had such amazing support from Children’s Heart Surgery Fund…”
A year down the line Miss Carin Van Doorn, our superhero, saved my Evie. On 30th October 2020 Evie received her full heart repair.
It broke me mentally. With COVID still around, I did everything on my own. Nine long hours my girl was in theatre but I had such amazing support from Children’s Heart Surgery Fund and the incredible nurses. Without the support I received I wouldn’t have been able to do it. Thank you so much for everything.
Evie received a certificate and a Katie Bear from Children’s Heart Surgery Fund after her surgery. She loves her bear!
When she was in theatre, the surgeons noticed Evie’s Glenn stents had fallen into her aorta (this had not happened before). On 8th September 2021, Evie had Cath lab surgery to balloon the stent in her aorta. It couldn’t be removed as it was too embedded.
Yet again, Children’s Heart Surgery Fund and the ward were incredibly amazing! Evie’s valves are still leaking and will need a valve replacement when she’s around 10 years old, fingers crossed! I know I will receive the best support from the Charity!
Evie is doing better than ever. She’s such an amazing, beautiful, happy three year old little girl who loves life so much.
She’s now at school and does everything a three year old child would do. Evie loves to paint and play with her friends and dolls!
We’ve been raising money over the past year for Children’s Heart Surgery Fund, doing two different fundraisers.
The first one on Wear Red Day 2021, just 8 weeks after Evie’s major surgery. Evie walked 5km and raised an amazing £700. And then a full year later, for her heart anniversary, raised a further £1085!
This is all for the charity that saved my daughter. I just wanted to give them something back and the money that is raised for this charity will help my Evie and lots of other children in future.
“…the money that is raised for this charity will help my Evie and lots of other children in future.”
Please join in with Wear Red Day on Friday 4th February 2022. This is a very good and important charity who not only save lots of young children’s lives but also put a smile on their face with things such as a Katie Bear teddy.
Smaller charities like CHSF aren’t noticed as much and they should be because they are incredible. Thank you so much for everything.
Chelsea Holder, mum to heart warrior Evie
Wear Red on Friday 4th February for children like Evie and raise vital funds and awareness of congenital heart disease.
Get your FREE fundraising pack here
Would you like to tell your story? We are always looking for families to feature on our blog to raise vital awareness and understanding of congenital heart disease.
Click here to share your story
Adult heart warrior Philippa wanted to make the last year of her twenties one to remember. She also wanted to use her big 30th birthday to raise funds for two charities very close to her heart.
Today, on her 30th heart anniversary, Philippa tells us a bit more about why she wanted to fundraise…
By Philippa Barraclough
I was born on 13th August 1991 with two holes in my heart and an interrupted Aortic Arch. At one week old I had open heart surgery. It was also my brother Isaacs’s 5th Birthday.
Children’s Heart Surgery Fund were a new charity back then and they supported my Mum and Dad by offering them a room to stay in at Killingbeck hospital whilst I had my surgery and whilst I recovered.
This allowed my parents to be closer to me during a time when they weren’t sure if they would be able to bring me home.
The charity has grown over the past 30 years into an amazing support network for families like ours. They ensure the whole family is looked after and given the support they need.
Over the past year (the last year of my twenties) I have counted my daily miles.
I have walked and cycled on a bike in my garage to complete over 1184 miles. At first, I did the distance between Bradford and Lands’ End. Once I completed that challenge, I dwalked and rode the distance between twelve different rugby league clubs.
I also write a blog [www.pipxar.com], so I used this platform to write about Children’s Heart Surgery Fund and to talk about the amazing work they do.
I had been in contact with the charity before now, so I knew Lisa (Senior Community Fundraising Manager) already. But getting to know Lisa more and learn about the charity has been wonderful.
Finding out how CHSF continued to work through the COVID-19 pandemic and looked at new ways of being able to continue with supporting the families on the ward and to help their fundraisers stay motivated has been great.
Lisa and I had regular catch ups during my fundraising; my blog posts would be read before I posted them. Lisa gave me so much help to ensure I was able to push for my target goal of £3,000.
All I wanted was to raise awareness for Children’s Heart Surgery Fund and BHF as they both do so much to support people like me. It’s been a nice way to celebrate turning 30!
Philippa has shown an incredible dedication over the last year. Setting herself an ambition target of £3000 amidst a pandemic, Philippa has smashed each challenge she has set herself.
She has been a fantastic, inspirational voice for all our heart warriors and truly shows the sky is the limit for what you can achieve! Thank you Philippa. Happy Birthday, and a very Happy Heart Day from all of us at Children’s Heart Surgery Fund. #BecauseOfYou
Inspired to fundraise for CHSF? Got an idea but not sure where to start? Drop us a line to chat!
Get in touch with Lisa on lisa.williams@chsf.org.uk or call 0113 831 4810
MORE AMAZING FUNDRAISERS
On 1st April 2020, at her 20 week scan, mum Liane found out her baby, George, had a congenital heart defect.
Now about to celebrate his 1st birthday, Liane tells us all about George’s heart journey so far and how they have been supported by CHSF…
Heart mum Liane says…
April Fools Day 2020 was our 20 week scan at Doncaster – and the day we found out our baby was a heart warrior. George was diagnosed with Transposition of the great arteries (TGA).
We were referred to the Leeds Congenital Heart Unit at Leeds Children’s Hospital, where George would have to be born. He would also have to undergo two heart procedures, one of which being open heart surgery. From day one all staff from the consultants to the nurses were all very supportive and reassuring.
Born on 12th August, George was taken away as soon as he was born to under go his first procedure (balloon operation) which would enable him to have some oxygen flow around his body. Unfortunately this was unsuccessful.
George formed a blood clot on the side of his brain which led to him having a stroke, leaving him with permanent brain damage which will affect all the right hand side of his body.
But this didn’t stop our little fighter! The surgeons managed to fit a stent in giving him time to recover for a few days before his open heart surgery which was performed by Miss Carin Van Doorn. At 12 days old (and what seemed to be the longest 8 hours of my life) George’s operation was a success!!
Our amazing boy has strived ever since. Despite everything, he has movement in both sides of his body and is hitting every milestone like any other baby. He is a cheeky, strong, happy little boy who fills our lives with so much love! we are proud to say we are the parents of a heart warrior .
The support from the Leeds Congenital Heart Unit, CHSF and the rest of Leeds Children Hospital really did help us through the whole time we were in there.
While George was in hospital, we stayed at Eckersley House. Without this accommodation funded by Children’s Heart Surgery Fund we wouldn’t have been able to see our boy everyday and be by his side all the way through his treatment.
The work and support from Children Heart Surgery Fund is truly amazing and life changing!!! Thank you!
Thank you Liane for such a wonderful account of George’s heart journey so far. A big Happy Birthday for tomorrow George, from all of us at CHSF!
On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region.
We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit.
If you would like to make a regular or one-off donation to help fund CHSF’s life-saving work, you can do so here. Thank you.
More from the blog…
On #WarriorWednesday, we like to celebrate the amazing heart heroes we support in our region. Telling your story raises vital awareness of congenital heart disease and recognises the incredible care of the Leeds Congenital Heart Unit.
Feedback from heart families tells us your story will help other patients and families dealing with a diagnosis of CHD to realise they are not alone and that there is support available from CHSF.
In Memory of Our Brave Little Man
Written by heart mum, Lindsay Brooks
John Arthur Brooks was born at Leeds General Infirmary on 28th April 2008. We were given his CHD diagnosis prenatally at 27 weeks, and although his condition was complex we decided to continue with the pregnancy and give John a chance at life.
From the very beginning John proved what a brave, courageous little boy he was who never gave up. Despite the odds stacked against him with his health, he battled on and did it with the most beautiful smile on his face.
John Arthur Brooks, born April 2008
Over the years John has had some major obstacles to overcome and as a family we’ve faced some pretty terrifying times with his health but he always pulled through with the amazing team behind him on Ward 51.
We are eternally grateful to the Heart team a Leeds, for never giving up on him.
John never complained, was always polite and charming to anyone who ever met him.
In fact he used to say he felt bad for children who were ill, or suffered and that he wished he knew how to help them.
He would worry about others and how things affected them, and he never felt he was more deserving of anything. If he was treated or awarded anything he would always ask what his brother would receive too.
He took great pleasure in giving to other people. His friends, family and charity.
In fact our New Year’s Eve consisted of a party that he would charge admission to the people who attended and we would play bingo and do raffles so he could raise money for Children’s Heart Surgery Fund.
We’ve benefitted as a family from this amazing charity in numerous ways. From the parental accommodation, parents room on the ward and also the activities they have kindly donated to the ward that helped the children through their stay in hospital.
John’s Katie bear, certificates and medals are proudly displayed in his bedroom from his surgeries that the charity provided. We cannot thank the ward and charity enough for their support through difficult stressful moments.
John was a massive Lego fan. To the point of being fanatical about it. He would always ask the play specialists for a box of Lego to play with.
If he had a stay in hospital I was always sent to the Lego shop for a new set or he would look forward to a trip to the Lego shop following his check up with Dr Hares (Dr Dom).
On the morning John passed away he built an amazing little house and a model that said I love you which was kindly sent to us by the liaison nurse Mike.
John’s ‘I ❤ U’ Lego model, from the morning he passed away
So many people have loved John throughout his life, anyone who has ever met him has been completely charmed by him but he never realised it.
He was such a humble little boy. He would often ask why people liked him so much. We used to tell him it was because he is was an amazing little boy. The messages we have received from people since his death, have all remarked on his lovely smile and how he was always such a happy little boy. We have been completely overwhelmed by the incredible support shown to us by friends and family.
His wonderful Godmother Kirsty and her two daughters decided to start the Miles for JB fundraising by walking 100 miles in a month. This was their incredible way of honouring our son.
Then his younger brother’s rugby team followed on by doing a sponsored bike ride in his honour raising even more money in support of such an important charity.
There have been so many donations it has been truly amazing. We cannot put into words how thankful we are to have so many wonderful people in our lives. People who are willing to help keep the memory of our beautiful boy alive.
Although our story ended in heartache, and our boys fight had to end we are proud to support CHSF as there are many more children who can benefit from it, and John would want that.
John was our first born, the first to steal our hearts and create a love that cannot be expressed in words. Rest now baby boy we love and miss you so much.
John passed away at LGI on 12th April 2021.
John’s Godmother, Kirsty, said:
When the world loses someone so young, it’s hard to make sense of it and you feel useless to help those suffering from the heartbreak.
The girls and I did our ‘Marathon in May’ to try and do something to help, in whatever small way we could. I think it also gave people a way to show their support.
So many people generously donated and we quickly hit £1,000 for Children’s Heart Surgery Fund – thank you to everyone x
We were joined in the fundraising by the amazing families of the Lock Lane Under 11’s rugby team. They joined John’s dad Andy and brother Luke on a sponsored bike ride.
They did an AMAZING job and this weekend the JustGiving page hit over £4,000!
I hope we’ve done you proud JB x #MilesforJB #TeamCHSF
In memory of John Arthur Brooks
28.04.08 – 12.04.21
MORE AMAZING FUNDRAISERS…
Lottie was born in Grimsby hospital, but just hours after her birth her mum Donna noticed something didn’t seem quite right.
Read Lottie’s #WarriorWednesday story…
Heart mum Donna says…Children’s Heart Surgery Fund is amazing. If it wasn’t for the charity, we wouldn’t have been able to stay by the side of Lottie while she was in hospital. The funding of the parent accommodation rooms takes so much pressure off parents when their world has been turned upside down. Also, with Lottie having an older brother and sister, this meant that they could come and stay over. Lottie was born with Transposition of the Great Arteries. We were not aware of this condition. We’d never heard of it in our lives. It is mainly picked up at your 20 week scan, but Lottie’s was missed. Around six hours after Lottie being born, I was questioning her blue coloured skin!
The midwife did her SAT’s, and they were at 20! She was in critical condition. Lottie was rushed to intensive care where she was put on a life support machine. Grimsby hospital worked very fast at finding out what was causing this, got the Embrace team there and got Lottie to Leeds ASAP. I couldn’t thank the midwifes and ICU enough on how fast they worked to save Lottie’s life. Our life was turned upside down in seconds!! When Lottie arrived at Leeds, they got her stable, with some ups and downs along the way. But at just eight days old she underwent open heart surgery with Mr Jaber. He is an amazing man and nothing can thank him enough for saving all these children’s lives!
After eight long hours, Lottie’s broken heart was fixed. After a few more days in hospital, we were allowed home. Now Lottie is a happy, healthy two year old that can live a normal life. Thank you to all the amazing team at Grimsby and a big thank you to the amazing team at Leeds who saved Lottie’s life. I think there should be more awareness of CHD and Transposition of the Great Arteries. If I had gone to sleep after having a long labour, I might not be writing this story today! Children’s Heart Surgery Fund is just amazing at keeping families together at probably the hardest time of their lives.
On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region.
We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit.
If you would like to make a regular or one-off donation to help fund CHSF’s life-saving work, you can do so here. Thank you.
More from the blog…
Heart warrior Leah was born with a heart defect, but her CHD went undetected until she attended a GP appointment for a cough four years later.
Leah’s mum, Rebecca, tells us about their journey with congenital heart disease so far and how Leah and her family have been helped by CHSF…
Heart mum Rebecca says…
We found out Leah had a sinus venosus ASD in September 2020 when she was 4 years old. She was born with it, but it was a huge shock because we never knew about it until she had a GP appointment for an unrelated cough.
When they listened to Leah’s heart, they heard a murmur and referred her for a heart scan. This confirmed the ASD.
After further appointments for various scans and discussions we got a surgery date for April 2021. The time around the date was surreal but we tried to make it as positive as we could.
Leah’s CHD was found at a GP appointment
Leah in intensive care after her open heart surgery
With Leah being five years old by the time of surgery she was asking lots of questions and was really scared. Children’s Heart Surgery Fund helped so much with the Katie Bear Goes To Hospital book and the Play Therapists were able to help Leah see it all from a child’s point of view.
We were told of the Leeds Congenital Hearts website and the children’s cardiac specialist nurses who have helped us every step of the way. They are always at the end of the phone or email.
Leah went into hospital the day before her operation for her pre-operation tests to be done. She was so brave having her canula put in for her blood test. The staff working that day really helped us get through it.
The next day was Leah’s surgery day. Leah was in theatre for around 6 hours.
When we got the call to say she was out of theatre later that evening her surgeon was happy to say it had been a success.
I visited her in intensive care and despite all the tubes and machines she looked ethereal. We couldn’t believe it.Leah thankfully started to recover quicker than we ever expected. She had tough days to come after surgery, but she did amazing and thrived.
She moved through high dependency and back onto Ward L51, where she got her Katie Bear (who she adores!).
Leah’s had her first check-ups now and we’re happy she’s doing really well.
She’s back at school and is so happy to have spent some time in the sunshine, playing on the beach and seeing her family and friends.
Leah and her CHSF Katie Bear and certificate, received after her open heart surgery
The support of Children’s Heart Surgery Fund has helped so much from gifts for Leah, to chats and cuppas with me.
We’ll be forever grateful to the nurses, the surgeon/s, doctors, housekeepers, Children’s Heart Surgery Fund…and all the people who helped us.
On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region.
We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit.
If you would like to make a regular or one-off donation to help fund CHSF’s life-saving work, you can do so here. Thank you.
More from the blog…
From finding out about Hope’s CHD at her 20 week scan and a hospital stay during the pandemic to having two open heart surgeries in 5 weeks, Hope (5 1/2 months) has fought every step of the way.
Heart mum Leanne talks us through her daughter Hope’s journey with congenital heart disease so far while Hope still stays at the Leeds Congenital Heart Unit…
My 20 week scan was a day I will never forget. A day I was alone due to COVID. The scan took longer than usual and I kept having to change position. They also asked me to take a walk for a few minutes.
I just thought they wanted her to change position but then I saw a doctor go in with the man that had been scanning me and when he left they called me back in. I had that gut feeling something was wrong.
When I went back into the room they started telling me about how they think the baby has cleft lip. I had a sense of relief as I know these things can be fixed. But then he brought up the heart defects and my own heart dropped. The midwife took me into a separate room where I rang Mike my partner and Hope’s dad. After hanging up the phone I just broke down into tears.
They couldn’t tell me the full extent of what was wrong because they couldn’t get a clear enough image. They referred me to specialists in Leeds for the heart and Sheffield for her cleft lip. We were unable to find out the sex too because of her position. But on 18th September 2020 we found out IT’S A GIRL!!!
Through out the pregnancy I had regular scans and we never got a clear picture of her lip as she either turned away or covered it with her hand.
New years Eve I went for a scan and they kept me in. Estimating her at 9lb they said a c-section would be safest option because my daughter had shoulder dystocia and was smaller.
Two days later on 2nd January 2021, Hope was born weighing 8lb at 5.13pm. she came out lovely and pink and crying, no cleft lip either. After a scan of her heart the diagnosis was, double outlet right ventricle of the ToF type, Vsd and severe pulmonary stenosis.
Over the next few days, Hope was doing so well and exclusively breastfeeding so on the 7th January we were transferred to Barnsley Hospital and closer to home.
Hope needed the blue lights a few times as jaundice kept creeping back. Her feet were so sore from all the blood tests to check her blood sugars and jaundice levels.
We also found out she has congenital hypothyroidism (born without a thyroid gland) and will need medication for life to replace what the gland would have produced.
On the morning of 19th January the nurse did a random monitor check to see what Hope’s heart rate and oxygen levels were.
Hope’s oxygen levels were in the 60’s and then dropped to the 50’s. This was where everything got crazy. Nurses came in with oxygen and then the doctors.
The next minute we were in a different room so they could help Hope better. The doctor in the middle John Paul (JP) was amazing and knew what to do as well as explaining to everyone else. If you’re reading this, thank you so much.
Hopes pulmonary artery that was narrow had started to spasm and close, so no blood could get to her lungs. They managed to stabilise her on intensive care but later that day it did it again and so we were transferred back to Leeds.
Hope was doing really well in Leeds she was on the congenital heart unit in high dependency Ward L51. She later moved into a private room where I could stay with her. But all through the night her sats kept dropping really low again. She had another two spells so was moved back onto high dependency.
On 22nd January, Hopes sats was up and down all day and she kept having the spells. They gave Hope morphene to stop a spell but it also stopped her from breathing.
Staff had to work on her, she ended up on a breathing machine and kept doing little breaths on her own but sometimes stopped.
The doctors said she needed a stent fitting to keep the artery open. I signed all consent forms and she was due to go down for her stent the next morning between 10 and 11am.
23rd January: Hope went down to theatre for her stent fitting at about 11.40am. Me and Mike, Hope’s dad walked with her and then left her in the doctors hands.
We went for a walk around Leeds to keep our minds busy and got a call about 1.30pm saying she was back on the ward and everything went well. We rushed back over to the hospital to see Hope and also speak to her consultant.
It turns out she needed two stents fitting and she had severe pulmonary stenosis so even hiccups could trigger the spells. Amazing how they did this by key hole and the only mark she had was a spot on her neck. Her oxygen levels were now above 90 and the surgeon said she handled it all really well.
On the 26th January we were allowed home. There was a long wait for the medication and a quick scan to check everything was fine with the stents.
We got home late that teatime and Hope finally got to meet her very excited brother and sister for the first time. We had a surprise banner and cake waiting for us with Hope’s Nannan and Great Nannan waiting too.
On the 9th February we brought Hope to Leeds for a heart scan. They only had one small concern and that was that there was some muscle growing on the entrance to her stent, causing some obstruction. They said they would keep a close eye on it and that if anything was to happen we would recognise the signs.
Every Friday the district nurse came to our house to weigh Hope and check her levels.
On the 23rd March, Hope’s oxygen levels was in the mid 60’s, they came up to 76 a few times but went straight back down again. The nurse rang Leeds LGI and we were advised to go to Barnsley hospital to have her monitored.
Hope spent the night in hospital and her oxygen levels didn’t get any better, so we were transfered to Leeds, Ward 51 again. For the next two days Hope was having bad spells to the point her oxygen levels would drop into the 20’s, whenever she was awake even on Morphene.
I had to hold her while she cried and screamed with her knees to her chest to try calm her but in the end they had to sedate her even more so she was asleep. It was obvious Hope wasn’t going to get any better so they planned to take her down to theatre the next morning for open heart surgery to repair her heart.
On the 26th March Hope went down to theatre at about 8am and came out of surgery at about 3:30pm. Unfortunately they couldn’t do the full repair because her coronary artery was blocking where they needed to cut.
Hope didn’t react well coming off the bypass machine so needed medication to help and had a blood transfusion too. It took a while to stabilise her levels and she needed another blood transfusion due to losing blood during surgery.
Hope was on lots of Morphene so she couldnt feel anything and had a ventilator to breathe for her so her heart wasn’t working too hard.
On 27th March, Hope’s kidneys still weren’t functioning so she had to have dialysis to help them along. On 28th March Hope had her drainage tubes taken out and also came off the ventilator.
She had alot of fluid and was really swollen but the nurses reassured me that the dialysis machine would help get rid of it.
They made a make-shift tube called a shunt to detour the blood from a branch that takes blood to her arm into her pulmonary artery to take the blood to lungs.
Hope’s heart’s too small at the moment for them to do what they need to do so we was told she would need another operation when she’s a year old.
On 29th March, Hope took a step back. The dialysis drip wasn’t draining so she ended up full of fluid.
Then having to be sedated for another tube to drain her was too much. Hope ended up back on ventilator and also the heart medication which they had only stopped a few days before.
Thankfully the new dialysis system was working fine and draining as it should do.
By 31st March Hope was doing really well and came off the ventilator. She was peeing by herself so the dialysis was set to just drain out not put anything in.
Mummy finally got cuddles this day too and even a little smile from Hope.
2nd April Hope was well enough to come off PICU and onto Ward L51. She also had a weaning plan in place because she was withdrawing from the Morphene.
Later that day I had the scare of my life. One minute I was holding her and the next all the alarms was going off. Nurses and doctors acted so fast, they were amazing. Hope ended up with a blood clot in the shunt they fitted and it was blocking her blood flow.
They managed to dissolve the clot and flush it out really quickly. As soon as I heard the words ‘clot in her heart’ my head started swaying and I had to leave the room and get some air. When I came back she was nice and settled asleep.
4th April I got a call at 7am as Hope was being sent to Intensive Care. She was really poorly and they was still trying to find the cause. They thought her shunt was blocked again but also treated her for sepsis just in case. She was put back on the ventilator and sedated – they also gave her another blood transfusion.
On 7th April Hope went for keyhole surgery so the surgeons could take a good look around her heart and arteries. They were happy with what they saw but they said she did have some fluid around her heart. A scan showed she had alot of fluid around her lungs too so she was put on more diaretics to try get rid of it.
The next day she was taken off the ventilator but still needed oxygen. Hope’s oxygen levels started to dip and she was working harder to breathe. A scan showed she had more fluid on her lungs and they discussed the possibility of needing to drain them.
13th April Hope was taken to theatre to have drainage tubes put in. She needed one on each side for both lungs and she had to be on a lot of pain relief while she had them in because of how painful they are.
On 14th April Hope was doing really well and was able to come off the ventilator but still needed abit of oxygen to help her.
By 15th April we were moved back to Ward L51 again and Hope also had the oxygen tubes taken off as she was coping well without it. The next day she had her drainage tubes taken out. They drained 100ml of fluid from one lung and 95ml of fluid from the other. She also started having to work hard with her breathing so needed to go back on the vapotherm machine.
19th April was a great day for me. Hope knew when I came in the room and was a lot more alert. I managed to get her on video smiling and chuckling at me making baby babble. It was the best feeling ever to see her smile again.
On 21st April Hope started getting fluid build-up – making her breathe a lot harder and her chest was sucking in. They put her back on her heart medication and also treated her for a serious infection called NEC as she had some blood in her stool and stomach. However, later that day her infection markers came back and they was low so the main culprit seemed to be the fluid.
22nd April and Hope was given her first Katie bear with medal and certificate. These are provided by Children’s Heart Surgery Fund. Sarah who is the charity’s family support worker meets me every week and we always message each other.
She has been a big support for me not only with giving tesco vouchers and helping with travel expenses for Hope’s dad, but actually been there to talk to and having tea breaks. It helps so much knowing I have someone here in Leeds I can turn to for help.
By the 24th April we ended up back on PICU. Hope had fluid overload and had over a kilo of fluid on her. Over the next few days Hope’s tummy kept getting bigger so they did a scan that allowed them to check her heart out in 3D.
On the scan it showed her tricuspid valve wasn’t closing fully which was causing blood to leak back into her body and flood her liver making it become enlarged and very tender. There were talks about attempting surgery to repair her heart again but things kept cropping up to prevent it.
First they thought she had an infection so she had to have antibiotics, then her thyroid levels dropped too low so needed to come back up to a normal level before they could operate.
Over the week I felt completely rubbish, I was speaking to Sarah from Children’s Heart Surgery Fund about it all. She said I needed a pick me up.
Sarah booked a hotel room for Sunday 2nd May so my other two children could spend the night with my partner and me and we could all be together. I loved every minute of it being able to spend actual time with my children and it not just being a quick visit here and there. The hotel CHSF booked was close to the hospital too so if I needed to I could get there quickly. It was definitely something we all needed and I’m truly grateful for that day together.
3rd May Hope was looking really poorly. I knew she was really ill but she’s didn’t look it until this day. She was breathing and sucking her ribs in so hard, she looked so tired too. They wanted to avoid putting her back on the ventilator as with how poorly she is it can cause complications with her heart function. They gave her strong sedatives and it seemed to help her a little. We were told surgery would be in a few days.
Tuesday 4th May doctors were going to put Hope onto the ventilator ready for surgery the next day, I kissed her forehead and left the hospital while they got her ready. I was over at Eckersley House in the flat where I had free accommodation. The house is run by a charity called the Sick Children’s Trust and CHSF give a big donation to Eckersley House every year.
I think I was there a total of 20 minutes when I got a call from Emily one of the nurses telling me to get over as fast as I could because they were having to resuscitate Hope.
I rang Mike on the way over and he set off to Leeds as soon as he could. It took them 2-3 minutes to get Hope’s heart beating again. When I got there everyone was stood around her cot and they still needed to get her on the ventilator. I was advised to wait outside while they got her on it. While I was waiting her daddy arrived and when I got the call we both went up together.
When we got in we were told things weren’t looking good and Hope’s body was showing signs of shutting down. My whole world came crashing down. The doctors kept saying sorry and that it wasn’t looking good but I was just numb and heartbroken and Mike was a mess too.
They did more tests and it showed her lactates had lowered to 8 but still very high. I don’t know how long we was stood there stroking her head, holding her hand, kissing her face but they did more tests and her lactates were then at 4.5. They said it was good that it was coming down but she was still extremely poorly.
Later that night we went over to the flat and didn’t get any sleep at all. We rang a few times through the night and her lactates had come down to 3 and hovered around that number all night.
The next morning, Wednesday 5th May, we got a call asking us to come over to speak to the surgeons. When we got there they took us into a private room and we all sat down in a circle. They started to tell us about how they knew she was really ill but what happened yesterday showed them she was alot sicker than they thought.
They said we had 2 choices, make her comfortable and be with her but she would only have two days left at the most or attempt a high risk surgery to shut the leaking valve off completely, leaving Hope with only one pumping chamber and a good chance she wouldn’t make it through surgery.
They said they don’t think they will ever be able to repair her heart but if this surgery worked it will allow more time for more plans, maybe even transplant further down the line but they’re not looking that far ahead yet.
We decided to go for the surgery. We couldn’t not. No way were we going to give up after she’s been fighting so hard to survive. She went down to surgery at about ten past 11, I think. My head was a mess at that point.
Before she went we painted her little hand and foot and got her prints on canvas. They said it could be about four hours before we hear anything, if nothing happens before.
Six hours later we got the call that she was out and stable we just had to wait while they got her all set up on PICU. When we got over we had a chat with Carin Van Doorn, Hope’s surgeon. Her heart is definitely unrepairable so what the future holds we don’t know yet.
They had to put a patch over her tricuspid valve to completely block it off because it had a tear in it and was very fragile so would tear again. They inserted a big, long stent into her pulmonary artery to open it up nice and wide and closed off the shunt they put in six weeks before because she can’t have both.
The hole in her heart they made a bit bigger so the blood can mix more now she only has one pumping chamber available. Her stomach was large and congested from all the blood leaking back into the body, so they’ve put a drainage tube in and it looks so much better. She came off the bypass machine a lot better than they expected her to and said her heart was strong.
They’re really pleased with how the surgery went.
Hope’s kidneys, lungs and liver have taken a big hit and need time to heal but she said it’s something that they can manage.
Now we just take each day as it comes and plan as we go. Carin said Hope’s not out of the woods yet but how she looks now is promising. They only needed to use a pacemaker for a short time and her heart started doing it all by itself.
6th May I rang the ward as soon as I woke up. Hope had a bit of a bumpy night but they said that’s to be expected. Her lactates rose to 8 but came back down to 3 again.
They also had to use the pacemaker for a while because of her heart rate slowing and give her a blood transfusion as she was losing a lot of blood through her drains. On this day we also finally got to register her birth after 4 months. The past 48hrs had been crazy so this moment was huge to us being able to register her and there was plenty of tears of joy.
Later that day we also had a visit from Sarah from CHSF. She came to give Hope her second Katie bear with medal and certificate.
The last few days Hope has been stable and doing great, she even made our local newspaper again back in Barnsley!
They’ve taken her off the medication that paralyses her and she’s now moving her hands and feet. She’s still on the ventilator at the minute but it has been turned down to 50%.
Every day she amazes us with her strength. She’s a true little warrior and we love her so much.
UPDATE
On 14th June 2021, after spending three months in hospital, Hope was discharged from Ward L51 and is now at home with her family in Barnsley.
You can follow Hope’s journey with CHD on her Facebook page.
On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region.
We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit.
If you would like to make a regular or one-off donation to help fund CHSF’s life-saving work, you can do so here. Thank you.
More from the blog…
Mum Becca recently wrote to the PICU team at Leeds Children’s Hospital, to let them know how her daughter Hope was doing and to thank staff at Leeds Congenital Heart Unit for saving her little girl’s life.
Becca has kindly agreed to to let us share Hope’s story…
My daughter Hope was transferred from Sheffield Children’s Hospital following complications during an operation. She was bleeding from her Aorta artery.
Hope on life-support at Leeds after surgery, age 5 months
Surgeons at Sheffield feared that Hope wouldn’t survive the transfer to Leeds. She did but when she got to Leeds her heart stopped. The surgeons and team at Leeds gave Hope CPR while she was on the heart lung machine.
The surgeons at Leeds fixed her aorta artery and saved Hope’s life. Hope was under anaesthetic for 16 hours in total and she was in a bad way when she came out, but her tiny heart was beating. Hope had gone a long time (around 45 minutes) without oxygen supply to her brain.
While in Leeds her brain started to swell and she started having seizures. An MRI showed bad brain damage and doctors feared for hopes future. Hope was transferred back to Sheffield when she was stable cardiac wise, still on her life support.
I never really got to thank anyone at Leeds for saving Hope’s life. It was a very unreal time for me and my partner and I believe we spent two weeks in Leeds just in complete shock.
Our once happy five month old little girl was now on a machine and we didn’t know if we would ever see her with her eyes open again. However they did and they were just as bright and as beautiful as they was before she went to sleep.
I would like to thank all the nurses on PICU at Leeds and the wonderful surgeon and her team that saved my baby. I would also like to give you an update on Hope.
Hope has suffered major brain damage, she has got cerebral palsy, epilepsy and global development delay. She had a recent diagnosis of West Syndrome.
Hope has just celebrated her first birthday
But she is an amazing little girl. She has just started weight baring in her stander, she loves her food and is feeding by herself. She just rolled over a few weeks ago and we had her first birthday. She also started with the mmmmm’s now so I feel like she’s going to say mummy soon!
She is so happy and laughs all the time. Her future is still unknown as we have new diagnosis regularly but we know she will be happy and will achieve in her own way.
We’re at home now as a family with Hope older sisters and hand on my heart I believe that is because of all the staff and surgeons at the Leeds Congenital Heart Unit!
Thank you for saving my child. For giving her a chance at life and a chance to fight anything that is to come. All our love, Hope and her forever grateful family.
Your donations help us to be there for the 1 in 100 babies like Hope who are born with a heart defect.
Every child diagnosed with a heart defect in Yorkshire is supported by Children’s Heart Surgery Fund.
MORE REAL STORIES
Due to be born in Hull, Lacia-Blu would need open heart surgery at Leeds in her first few days of life in order to survive.
Heart mummy Jodie tells us all about her daughter’s amazing journey so far with congenital heart disease.
Mum Jodie writes…
I first found out I was pregnant with Lacia on 14th March 2020 at 17 after having a very straight forward first pregnancy. I was really laid back until I got to my 20 week routine scan at Hull Women’s & Children’s.
After being scanned for an hour, I was taken into a small room and told I need to return the following day with my partner as something wasn’t right with her heart.
As you can imagine I was confused, anxious and didn’t know what to think. I returned the next day and met Doctor Codie who explained my daughter had TGA (Transposition of the Great Arteries) and I would have to give birth in Leeds.
Lacia would need open heart surgery in her early days of life to survive. I had so much information to take in, I was so overwhelmed.
Lacia-Blu was born in October 2020
“I had all my trust in these amazing doctors.”
Mum Jodie with brand new daughter Lacia-Blu
Lacia had open heart surgery at nine days old
Many days passed. I had so many questions and just couldn’t understand why or how this happened. I was in complete shock.
I was transferred to Leeds who confirmed the finding. I then had monthly routine scans and met foetal medicine who planned my induction.
They made me feel at ease and provided me with lots of information, leaflets, and websites to look at. We were given plenty of emotional support. I was always able to pick up the phone and there would always be someone on the other end to support and listen to my worries or questions.
At 38 weeks on October 19th at 3:25pm Lacia-Blu Rispin was born. It all happened within a blink of an eye. Everything was so relaxed I didn’t even realise how many baby doctors were in the room.
They kept me reassured and positive. We were able to have skin to skin and dad was able to hold Lacia before she was wheeled away. I had all my trust in these amazing doctors.
Lacia started in NICU for three days then was transferred to Ward L51 (the children’s heart ward). And at just nine days old, Lacia had been taken down ready for her open heart surgery.
Six hours later…we got the call from Carin Van Doorn to say everything had gone well. Miss Van Doorn was really happy with the outcome and Lacia was in intensive care waiting for us.
I was so nervous seeing her for the first time as I didn’t know what to expect but the nurses explained everything they were doing and kept us reassured. They got us involved with her daily tasks like baths and feeds to help us bond with her.
Each day she was improving and getting stronger and stronger. On 1st November 2020 at 12:48 I walked Lacia out of Intensive Care, back down too ward L51. She was just four days post op and it was one of my proudest mum moments.
On the 5th November Lacia was discharged and ready to meet her big brother for the first time.
Lacia-Blu and her big brother Layton
Lacia and Katie Bear
Lacia-Blu is now 6 months
Everyone we met was amazing. The midwives, nurses, doctors. And Children’s Heart Surgery Fund – they have been a massive support in our heart journey and have carried on supporting us since leaving the hospital. Not just for Lacia, but for me and my partner as well.
She wears her CHSF medal with pride and loves her Katie Bear.
On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region.
We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit.